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Advocacy for Inclusion Blog

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AUG
28

Everyday Human Rights

The self-advocates in our Self-advocacy Group have a nearly unquenchable thirst to learn about Human Rights.

The concept of human rights can be a hard one to apply to your everyday life. Knowing about human rights and recognising breaches in your own life can be very different and difficult. At today’s meeting we discussed several rights and the often shocking personal examples self-advocates had of breaches of these rights.

Article 16 (UDHR*) / Article 23 (CRPD*) – the Right to marry, have relationships, have a family etc

Self-advocates have experienced:

·         Being told they shouldn’t get married because of their disability

·         Being forced into a relationship

·         Having the right to choose whether to have sex or not taken away

·         Not being informed about safe sex

·         Being discouraged from a relationship because others don’t approve of the person

·         Relationships that are inequal in power, with a lack of respect and trust

Article 23 (UDHR) / Article 27 (CRPD) – the right to work of their choice, fair pay and equal conditions, join a union

Member of the group had experienced:

·         Being paid unfairly – a lot less than others doing the same job

·         Being segregated and only being allowed to work with others with disabilities

·         Sheltered workshops as discrimination

·         Being rejected for a job because of their disabilities

·         Being stuck in a job they hate because no one will help them to find a new job

It was refreshing to learn that none of the group had experienced bullying or discrimination while working in a job.

Article 5 (UDHR) / Article 5 (CRPD) – the right to be free from torture, cruel, degrading or inhumane treatment

Self-advocates have experienced this treatment from those they trust most (family members, intimate partners etc) even as adults:

·         Being hit for being “naughty”

·         Being sent to their room without dinner

·         Having TV removed as a privilege

·         Being told who they are allowed to see, talk to and how it will happen

·         Being yelled and screamed at

·         Being threatened

·         Put-downs and name calling

Being able to recognise these everyday breaches of their human rights is the first step to being able to speak up and stop this inappropriate behaviour. These kinds of behaviour are not acceptable, and self-advocates should be able to receive the support they want to deal with it. Please contact us if you’d like to know more.

 

* UDHR = Universal Declaration of Human Rights, CRPD = Convention on the Rights of Persons with Disability

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AUG
14

Pre planning needed for NDIS success

Pre planning needed for NDIS success

 

Knowing what you want from the NDIS is very important. More critically it is becoming clear that you need to know this BEFORE you meet with an NDIS planner.

 

Many people with disabilities need to work through what their current arrangements are, and whether they are happy with them, before they then start looking at what they would like their arrangements to be. All NDIS applicants should do this to get the most from their application process.

 

Our self-advocates have been working through their current arrangements and deciding if they are the right thing for them. Most say that they would like to change something. Most also say that they have big gaps in support that they need, or the way that arrangements are made for them. Many have whole areas of their lives that aren’t supported at all, like social engagement or having the right job.

 

Evidence from other NDIS trial sites is showing that the better outcomes for NDIS recipients are when some pre-planning is undertaken before meeting an NDIS planner. Those who have an idea of what they want have an easier planning process, and more satisfying outcomes.

 

The person with disability hasn’t met the NDIS planner before, and the planner doesn’t necessarily have a good idea of what that person’s experience of disability is. They don’t know how disability affects that person, nor how that person has built their life around their disability. No planner will understand every disability, and they can’t be expected to know how disability impacts on every person.

 

What is needed is a pre-planning process. When the NDIS is starting an intake with a person with disability they should first ensure that the person has worked through their current arrangements and what they want to keep, what their vision is and how to get there. Expecting this to happen with a planner, whom the person has never met before, and to do it within a short time window will increase the likelihood of the planning process missing crucial elements of that person’s vision.

 

Advocacy for Inclusion recommends that the NDIA introduce a requirement that a person with disability meets with someone (like an independent advocate, or other independent supporter not engaged in service provision) to ascertain what they would like the NDIS to achieve for them. This could happen individually or in small groups like Self-advocacy meetings.

 

We recommend using our “My NDIS” toolkit for this.

 

Pre-planning would improve efficiencies for the NDIS and also provide more certainty that NDIS plans and packages are controlled by the person with disability and reflect their choices. Pre-planning would also speed up the availability of planners by reducing the need for multiple planning meetings to get the right plan developed.

 

It is vital that this is undertaken in an accessible way, with appropriate format resources, and is built around the person with disability and their vision. Self-determination, using self-advocacy and supported decision making techniques, will support people with disabilities to know what they want from the NDIS and to be confident in asking their NDIS planner to support their individual vision.

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AUG
14

Self-advocacy Group update

The Self-advocacy group met today to plan out the next few months and talk about “Safety in the Home”.

The group will be meeting every Thursday from 1 – 2:30pm in the Griffin Centre. Our planned topics for the next 8 weeks are:

·         21 August – Safety in the Home, part 2

·         28 August – Human Rights

·         4 September – Friendships and Relationships

·         11 September – Reviewing your goals / NDIS progress chat

·         18 September – Health & Wellbeing

·         25 September – Floriade visit (weather pending) & Wellbeing

·         2 October – All about work

·         9 October – Dealing with Neighbourhood Problems

All people with disabilities are welcome to attend and groups are free.

Discussion about “Safety in the Home” was interesting with at least half of the self-advocates having recently had problems with abusive or difficult neighbours. The group worked together to share ideas for feeling safer at home and in the community. We also used the recent report from NDS “Speaking Up About Safety - Issues for Service Providers to consider” as a conversation starter. Earlier this year the Self-advocacy Group participated in a focus group for this report. You can read this report on the NDS website: http://www.nds.org.au/projects/article/171

If you have any questions about the group please contact Karen on 6257 4005

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JUL
29

Self-advocacy group week 4 - Insights

Our Self Advocacy groups have led to some very important insights over the past few weeks during our discussions about the NDIS and what we would like for our futures.

As mentioned in the previous blog, careers was one of the highlighted important areas that our self advocates wanted to make positive changes in. Many of the group have shared their experiences about working in sheltered workshops. It is sad to acknowledge that most of the experiences were quite negative. The self advocates spoke of bullying and harassment being an ongoing issue during their time at the workshops. Many having made formal complaints and many also leaving the workshops as a result.  It was felt by some of the self advocates, that volunteering seems to be the only way to be actively involved in a work area that they wished to be in, as paid work is very difficult to find. 

Next week is the final session in the NDIS focused series and we will be finishing the session with a social chat and cuppa at a local cafe. 

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JUL
17

Self-advocacy group week 3

The Self Advocates Group has been meeting twice a week on Mondays at 330-5pm and on Thursdays 1-230pm.

We are now a few weeks  into the topics covered by “My NDIS. My life, My vision, My say”. The response has been fantastic with the number of self-advocates attending the sessions having doubled. The topics have led to interesting discoveries about ourselves and what supports and services we have and what we want.

The first topic  we covered was “Let’s get Started” Am I eligible for the NDIS? This involved being able to use the NDIS access checker on the iPad, which interestingly most of our group found very difficult without help, especially for those visually impaired. Week two covered All about me and my life now” What supports do I have now. Week three was “My vision, My life “ What are my goals? What are my dreams?”. Both groups identified Relationship’s, Careers and Transport as being the areas of their lives that they most wanted to make changes in, in order to improve their lives. It was established that access to reliable accessible transport was difficult especially with mobility aids. Walking to bus stops was also difficult, especially at the end of the day when people were tired.

The feedback from the  self-advocates about the groups has been positive. There is a lot of group participation, brain storming and support given to each other. People are enjoying feeling comfortable with their peers knowing that their ideas and opinions are being heard and respected.

The next topic to be covered is “let’s get things happening”- What steps do I need to take to reach my goals? Then lastly “My NDIS, My say”- My ideas for a meeting with my Individual NDIS Planner.

Self-Advocates are welcome to attend either or both meetings.

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JUL
10

The rundown: Our submission to the ALRC's Disability Inquiry

Last week Advocacy for Inclusion made a submission to the Australian Law Reform Commission’s discussion paper Equality, Capacity and Disability in Commonwealth Laws.

 

The ALRC’s paper provides a thorough analysis of the legal and practice issues regarding equal recognition before the law and legal capacity of people with disabilities. It includes a number of progressive proposals.

 

The four high level National Decision-Making Principles proposed are commendable, especially Decision-Making Principle 1, the right to make decisions. This could promote an important shift away from the current preoccupation with assessment of decision-making capacity towards acknowledgement of decision-making rights.

 

However, we are concerned that there remains a heavy focus on the decision-making capacity instead of decision-making rights of people with disabilities in the ALRC’s paper. The concept of “fully supported” decision-making is particularly problematic and does not reflect the universality of legal capacity, explained in CRPD General Comment on Article 12:

 

The right to equal recognition before the law implies that legal capacity is a universal attribute inherent in all persons by virtue of their humanity and must be upheld for persons with disabilities on an equal basis with others. (emphasis added)

Here are some of our key comments and recommendations summarised:

·         Cultural change and capacity building is required in order to make the shift towards supported decision-making away from guardianship successful.

·         Substitute decision-making diminishes, rather than protects, the rights of people with disabilities.

·         In supported decision-making arrangements the person with disability is always the person with decision making authority, who appoints their own decision supporters.

·         The ALRC’s proposed “fully supported” decision-making model cannot be considered a true supported decision-making model.

·         Everybody has the right to make decisions, regardless of their assessed (perceived) decision-making capacity.

·         Where a person with disability’s current will and preference cannot be ascertained, after all steps to ascertain them have been tried, facilitated decision-making should be used.

·         An independent body should be established to provide formal monitoring and safeguards for people with disabilities in supported and facilitated decision-making arrangements. This should be a non-negotiable feature of facilitated decision-making, whilst people in supported decision-making arrangements should access this resource by choice (with support as needed).

·         The priority for the ALRC should be to ensure that informal supported decision-making arrangements are acknowledged and supported by Commonwealth and State and Territory laws.

 

It has been a privilege to be involved in this Inquiry and to contribute our experience and expertise on decision-making. We look forward to the final recommendations and thank the ALRC for undertaking this major and important Inquiry.

See the full details of our recommendations in our submission here.

 

 

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JUL
03

Silencing the disability voice

For many people the federal budget was an inconvenience providing an academic exercise in social theory, but for people with disabilities it outlined a fundamental shift in our ongoing fight to be valued and respected members of the community.

 

From the first week in July 2014 people with disabilities will lose several mechanisms which take our voices to the wider world and assist us to be equal participants in public discourse. These include the loss of a dedicated Disability Discrimination Commissioner, the closing of the Ramp Up website, withdrawal from the UN disability committee, and continuing reductions in disability advocacy funding. Few people will notice this except for those of us who already know how hard it is to be heard, to be included and to be taken seriously.

 

Additionally, the federal budget and McClure Welfare Review are ramping up the attack on disability pensioners. This is a favourite mechanism for governments who want to be seen as tough. The result is that disability pensioners feel increasingly marginalised and stigmatised for being who they are.

 

Alongside the loss of key mechanisms to support our voice, the current agenda serves to silence people with disabilities by making them ashamed for needing welfare supports.

 

More critically the mainstream discourse, encouraged by government, is representing people with disabilities as bludgers, rorters, and no hopers. Some sections of the media are creating an environment where vilification and hate crime are encouraged. Already some people are asking whether NDIS supports are really needed or are they “luxury” items contributing to an aspirational lifestyle.

 

This can only happen in an environment where people with disabilities are not believed, where mistrust and hatred about us have re-entered the public conversation, and it will probably get worse.

 

The overall impact of the federal budget is to silence people with disabilities. Some budget measures specifically take away our capacity to be heard, to be taken seriously, and to be part of the mainstream discourse. Other measures deplete our confidence in speaking up, in being part of a conversation that is becoming increasingly vicious and suspicious.

 

Australia is returning to a time when people with disabilities were seen as a burden on society. We are portrayed as people who take but never willingly contribute.

 

This is damaging and counterproductive and will not result in better engagement by people with disabilities. Rather we are in danger of returning to those former times when people with disabilities felt safer hidden away where vilification and misjudgement couldn’t reach.

 

The NDIS might provide supports, but it will not provide acceptance, credibility, jobs, or inclusion. It is up to the community to do that and it is up to the government to lead the community by example.

 

Rather than silencing the mechanisms that support people with disabilities to be equal participants in public discussions, it is time for the government to embrace the voices of people with disabilities in all our diversity and colour. We are part of the community and have the right to be heard.

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JUN
23

Self Advocacy Group Calendar July

Self-Advocacy Group Invitation

My NDIS
My life, My vision, My say

The National Disability Insurance scheme is starting in the ACT July 2014.

In July, our Self Advocacy group meetings will talk about being ready for your first NDIS planning meeting.

We will be meeting twice a week 30th June – 31st July
They will run in the Griffin Centre Level 2 room 9:

Monday
3:30-5pm

Thursday
1-2:30pm

Attend one or both groups!

TOPICS COVERED

Week 1 “Let’s get started”
Am I eligible for the NDIS?

Week 2  “All about Me and my life now”
What supports do I have now?

Week 3 “My vision, My Life”
What are my goals? What are my dreams?

Week 4 “Let’s get things happening”
What steps do I need to take to reach my goals?

Week 5 “My NDIS, My say”
My ideas for a meeting with my Individual NDIS Planner

Resources and Folder provided

 

 

 

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JUN
16

Control & Choice Expo 2014

Control & Choice Expo 2014

On 22 May 2014 Advocacy for Inclusion hosted the Control & Choice Expo with great success. Over 2000 visitors attended the event, with more than 110 businesses and charities from Canberra and the surrounding region showcasing what products and services they have to offer people with disabilities.

The aim of the Control & Choice Expo was to give people with disabilities the opportunity to see for themselves, what programs and services are available to them.

Advocacy for Inclusion was proud to host an event with the help of many great volunteers and sponsors: ABC 666 Canberra, Bank MECU and ACT government Community Services Directorate. 

The Day Kicked off with an Outside broadcast from 666 ABC Canberra and hosted by the Control & Choice Expo Patron, Genevieve Jacobs.

Genevieve Jacobs took the time to explore some of the more quirky types of services on offer, such as Floating Beach Wheelchairs, life coaching services and Sexual Health and Family Planning ACT (pictured).

As the Patron of the expo Jacobs wanted to send the message that “Everyone deserves to speak with their own voice and everyone's individual gifts and abilities deserve recognition. The implementation of the NDIS promises a fresh start and a new direction for many, and the Control and Choice Expo will provide a strong, locally oriented starting point for that journey."

You can read her entire message at: http://www.advocacyforinclusion.org/index.php/88-uncategorized/153-message-from-our-patron

Visitors arrived in droves from 10am, many keen to see what programs, products and services are available for people with disabilities in Canberra.

Organisations provided visitors with a wealth of information, and opportunities for future support, while exhibitors were able to network with local and interstate organisations. 

Nicole from Australian Healthcall said “It allowed everyone to come together in one place and give exposure particularly for several people who had no idea how to access service.”

Many people were thrilled to have so many diverse organisations under the one roof, an opportunity that many people with disabilities have never had before.

 

 2014-05-22 09.40.08 ABC 666 cirtificateCC Expo 16webCC Expo 39web

 

Missed out on the Control & Choice Expo 2014?

A full list of exhibitors can be found at: http://www.advocacyforinclusion.org/index.php/control-choice-expo/exhibitor-profiles

Also you can drop into our office for a free Control & Choice Expo showbag with the Exhibitors’ Guide and exhibitor information from the day. Get in quick!  

A full list of our fantastic volunteers and supporters can be found at: http://www.advocacyforinclusion.org/index.php/control-choice-expo/thank-you

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JUN
12

Overview: Submission to the proposed ACT Out of Home Care Strategy

Overall, Advocacy for Inclusion supports the proposed Strategy. Many initiatives outlined show great potential to support the needs of families headed by parents with disabilities.  

 

In particular we support the service elements proposed under the Strengthening High Risk Families Domain, which include intensive in-home placement prevention and restoration supports. We expect that the introduction of such supports will lead to very positive outcomes parents and children with disabilities, as well as significantly reduce pressures on the out of home care system.

 

We also support the proposed improvements in oversight and governance of out of home care agencies, particularly in light of the investigations and recommendations made by the ACT Public Advocate’s Office.

 

We strongly recommend that these initiatives are followed through as they represent an important shift in service delivery, which will contribute to the development of a more effective and sustainable child protection system.

 

However, we remain concerned that a lack of acknowledgement of people with disabilities as parents and the particular barriers they face will result in continued exclusion of people with disabilities as valued family participants. Parents with disabilities and their children are overrepresented in the child protection system; we are looking for improvements to the proposed Strategy to ensure that they are not forgotten or further marginalised.

 

Here are some of our recommendations summarised:

 

·         Acknowledge people with disabilities as parents and the particular barriers they face.

 

·         Include provision to routinely collect demographical data about parents and children in the child protection system, including whether or not they have disability.

 

·         Acknowledge that some parents with disabilities require ongoing support and this must not be mistaken for an inability to address concerns that brought their child into care. In these cases assessment must take into consideration whether the parent has the capacity to be a ‘good enough’ parent with access to adequate and appropriate parenting supports.

 

·         Include independent community based advocacy for children in the out of home care system.

 

You can see our full submission here.

 

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MAY
13

Without advocacy ...

We got word yesterday that Mel had died. She was a lovely woman we’d known for a number of years and had assisted with advocacy. She had also participated in our women’s self-advocacy course last month.

 

Mel’s mother was so pleased to hear from us when we rang to offer condolences. It gave her the opportunity to let us know that it was our advocacy that had contributed substantially to Mel having a great last few years.

 

When we first assisted Mel she was in enormous pain, her wheelchair was terribly uncomfortable and she couldn’t sit in it for very long. She spent most of her days in bed feeling miserable. She asked us to just help her to get the pain under control. No one seemed to listen to her concerns about the pain or the chair. She just wanted someone to listen.

 

We got her medications checked and improved. We worked on having the wheelchair reassessed and fixed to suit her.

 

Mel then became active in her local church social group. She’d catch up with the ladies once a week and they’d chat, do craft and go places together. Mel’s life became a joy to her and to the ladies. They all checked on each other, socialised outside group times, and had a ball. The local paper interviewed her and the group. The article appeared with a lovely photo that spoke volumes. We have it stuck on the wall in our office.

 

Without advocacy Mel’s last few years would have remained pain ridden, inactive, and miserable. The assumption that she couldn’t do anything, and there wasn’t much point, would have continued. Without advocacy her family would have continued to watch her fade away in the most horrible circumstances.

 

Instead Mel had some years in the sun, living in the community and enjoying life.

 

Vale Mel – you were amazing.

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MAY
12

No such thing as "easy welfare" - People wtih disabilities WANT JOBS

At the weekend Social Services Minister Kevin Andrews spoke of changes in the upcoming federal budget:

 

“The days of easy welfare for young Australians is over and we expect people who are capable of working to be working… We put people on it and it’s a kind of set and forget payment.”  

 

He was talking about people with disabilities aged under 35 who are currently receiving the Disability Support Pension.

 

At Advocacy for Inclusion we know that there is no such thing as “easy welfare” for people with disabilities. For them, there is no forgetting that they are on the pension. There is no forgetting that you can’t have the nice things other Australians have because you simply don’t have the means.

 

In late 2012 we talked to 20 people with disabilities in the ACT to find out about their future hopes and dreams, and their experience of control and choice. The findings painted a very concerning picture.

 

People with disabilities want access to the basics of the Australian lifestyle that most take for granted:

 

·         To move out of the family home;

·         To live with the people of their choice (instead of having no control over the people that live in their home);

·         To go on a holiday of their choice (instead of being forced to go on “respite” with people they did not choose and to locations they do not choose);

·         To get out and about in the community and mingle with other people;

·         To learn and maintain living skills and independence.

 

People with disabilities were unable to realise these goals because they lacked the resources and the supports to do so. As Advocacy for Inclusion’s General Manager Christina Ryan blogged last week, people with disabilities are not looking for a gold plated service. People with disabilities are not living comfortable, easy lives on the pension.

 

Most significantly, almost everybody told us that they want to get a job or work more hours. They want jobs. If they already have a job, they want to work more hours. The Disability Discrimination Commissioner explains “What we have is an employment problem, not a rorting problem”.

 

Many people with disabilities in our study had been trying to get a job for a number of years. Some did unpaid work for churches, charities and hospitals. Some had been placed in training course after training course as they waited for a job offer; years of training but still no job. Some were still persisting despite being exited from Disability Employment Services, having concluded that there was no hope for them; employers were not willing to give them a chance. And some, after having been through all of this – the long periods of unpaid work, the training, the rejection – had finally given up but they still longed for a job.

 

People with disabilities do not want an easy ride and they are not getting one. They want jobs! Portraying people with disabilities as ‘dole bludgers’ does nothing to help them get into the labour market because employer attitudes are already a big barrier for people with disabilities. We need the government to support people with disabilities to get jobs, not push them further into poverty and reinforce negative stereotypes.

 

 

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MAY
05

Don't Mess with the NDIS

Don’t Mess with the NDIS

 

 

The National Disability Insurance Scheme (NDIS) is underway with launch sites trialling in various locations and further launch sites imminent. Many people with disabilities, their families, and supporters are excited to be so close to a better world where people might finally have what they need, live with dignity, in less pain, as members of the community.

 

In recent times there have been suggestions that the Scheme might be overspending its targets or that people with disabilities might be getting more than they “deserve”. These suggestions aren’t new, some doubters have always suspected that people want “gold plated service”; others simply can’t understand the full impact of disability on a person and those around them.

 

No one who is around anyone with disability talks like this, its others who don’t understand and who question the genuine need for support.

 

Some suggested solutions are: to cap packages, or maybe means test eligibility, or perhaps slow down the Scheme altogether until we know how it might operate.

 

None of these suggestions will work, and all will profoundly sabotage an NDIS that has been well thought out, has addressed the doubts, and which will work well if allowed to.

 

Capping Packages

 

Every person with disability is different. Some people require substantial support, others need less. Some people need a large amount of equipment just to be able to get out of bed and shower; other people require no specialist equipment at all. In short, capping packages will severely limit those people who do need substantial supports to live with dignity.

 

We cannot predict how the dice falls for any person and the few people who will need larger packages are balanced out by those who may only require some basics. This is why there is an understanding of an average sized package, only a few people will have that average, most will fall under or over. That’s how averages work. It’s how the insurance system works and that’s what the NDIS is based on.

 

In short the economists have sorted this one out and built it in.

 

The NDIS is already capped. Only 10% of the disability population will be eligible for Tier 3 packages. All other people with disabilities, over 3.5 million Australians will receive necessary bits and pieces under Tier 2; they won’t get an annual package because they don’t need it.

 

Means Testing

 

Disability can cost a lot, a real lot. Look at the size of the Tier 3 packages that some people will need and you start to get the idea. Imagine if you had to find $65,000 every year to get the equipment and support that you need.

 

That’s “need” not “want”.

 

Disability isn’t discretionary. You can’t decide that something else is more important. You just have to spend what it takes or go without. Up until now many Australians with disabilities have actually gone without. According to the Australian Institute for Health and Welfare just about all the targeted Tier 3 people have been going without for years. Those than can get supports and equipment get less than half of what they need. Many don’t get even close to that. That’s what the NDIS is for and why it’s so important. It’s embarrassing that it’s taken so long. 

 

How would means testing work in practice?

 

Will means testing apply to only the individual, or would it also be applied to the family that they live with (household income)? Does this mean that a 35 year old living at home with their parents would have their NDIS limited, or would find themselves ineligible for Tier 3 support, because their parents both work or own a house worth over $400,000 for example?

 

Perhaps means testing would mean that anyone on an income over $100,000 is unable to access Tier 3 packages. But what happens if that person actually has an annual cost of disability of $60,000?

 

People with disabilities often refer to the “cost of disability” and how it keeps them poor. There is a small cohort of people who do self-fund at present because all current supports and equipment schemes ARE means tested. These few become trapped in public housing or stuck living with their parents because they never have a capacity to save or to become truly financially independent – despite working.

 

Means testing the NDIS will act as a barrier to employment. Why would you get a job for more money, or work harder, when it will result in your losing your vital supports or equipment? There is no point going from a job paying $50,000pa to a job paying $60,000pa if the means test is set at $55,000. Why, because your cost of disability is large and losing access to the Scheme isn’t worth the extra income when your cost of disability is $40,000pa.

 

No, the NDIS must be universal and remain about disability not about income. We want to encourage people to participate not actively discourage them by putting significant barriers in place to being employed.

 

Slowing the NDIS rollout

 

The Commission of Audit made the curious recommendation to slow down the rollout of the NDIS. Given that the Productivity Commission identified that the NDIS will result in a major growth in GDP this seems strange.

 

Oh, and the Productivity Commission wasn’t expecting that, they were actually surprised by their own finding.

 

If the Australian economy is in such trouble then surely something that will substantially contribute to growth should be embraced with open arms. The NDIS is that something. It’s on the same scale as building major infrastructure, or opening a big new mine. It will grow jobs, reduce dependence on welfare, and will ultimately create over 1% of GDP.

 

Perhaps the government should consider rolling it out faster to assist with the budget bottom line?

 

Don’t Mess with the NDIS

 

Many of the issues facing the NDIS today have been facing it since it was first envisaged. The Productivity Commission, various bureaucrats, politicians and the community have all raised concerns about eligibility, sustainability and overall cost. Working on those concerns has resulted in the NDIS that is being rolled out today.

 

Sure it isn’t perfect but that’s why there is a trial aspect to the launch sites.

 

The Scheme has already been narrowed significantly by setting eligibility for Tier 3 packages at a population level of 10% of Australians with disabilities. Further limiting the Scheme will only damage it. These suggestions risk making the NDIS a shadow of its intended self and in danger of becoming an echo of the old system we are trying to abandon.

 

Everyone wants this to work, we all want it to be sustainable, and for those who need it to get it. There certainly aren’t any people with disabilities or their families and supporters who don’t want it to work. Seriously is anybody suggesting this? Are current doubters raising anything new? No.

 

Most people with disabilities aren’t getting what they need, many aren’t even close. The NDIS will take courage, enthusiasm, honesty, but most of all persistence.

 

What it doesn’t need is doubters talking it down. It doesn’t need to be revised at every turn before it’s even underway and through its first year. So much of the work and those difficult questions have already been addressed.

 

What the NDIS needs is to get underway and to get on with it.

 

 

Christina Ryan is the General Manager of Advocacy for Inclusion and the Chair of the Disability Advocacy Network of Australia. She is also a person with disability who uses support.

 

 

 

 

 

 

 

 

 

 

 

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APR
29

Critique: The New Framework for Reducing and Eliminating Restrictive Practices in the Disability Service Sector

Last year Advocacy for Inclusion made a submission to the draft National Framework for Reducing and Eliminating the Use of Restrictive Practices in the Disability Service Sector. The updated Framework was endorsed by Commonwealth, State and Territory Disability Ministers on 21 March 2014.

 

The final Framework is a significant improvement on the draft version. A number of the changes that Advocacy for Inclusion wanted to see have been made. Some of the positive developments include:

 

1.       Adding the “elimination” of restrictive practices as a core aim of the Framework rather than only “reducing” them;

 

2.       Adding that challenging behaviours are "perceived”. The concept is fluid and subjective, not absolute or fixed;

 

3.       Including the full range of restrictive practices in the definition of restrictive practices. This includes environmental and psycho-social restraints and consequence driven practices;

 

4.       Using the full range of the relevant aspects of the Convention on the Rights of Persons with Disabilities in the guiding principles;

 

5.       Improving the outline of a “person-centred focus” in the guiding principles. This includes recognising the presumption of decision making capacity and clarifying that people with disabilities are the "natural authorities" over their own lives, with support from others as required;

 

6.       Removing "best interests" as a concept informing the Framework.

 

Unfortunately, there remain major problems with the Framework. It has missed the mark in terms of the overall angle and lacks discussion on how restrictive practices ought to be conceptualised in order to inform the work we do to eliminate these practices:

 

1.       There is no reference to the National Disability Strategy 2010-2020. The National Disability Strategy outlines the direction of public policy regarding people with disabilities, yet the new Framework is not explicitly informed or guided by this Strategy.

 

2.       The dilemmas in determining when restrictive practices are ‘needed’ are not identified or explored in the Framework. Restrictive practices are theoretically intended to protect a person's rights and safety; however, often these practices are used for the wrong reasons. Indeed the idea of "last resort” or what the “right reasons" might be are extremely subjective and difficult to determine. The Framework fails to acknowledge these tensions and dilemmas, which are a central issue for people with disabilities and the people supporting them. Along with acknowledging these issues, perhaps an outline of principles for navigating such issues would also have been helpful.

 

3.       The social model of disability is absent from the Framework. The social model should have formed basis for conceptualising ‘challenging behaviours’ and ‘restrictive practices’. The way we understand these concepts makes a major difference to how we seek to eliminate restrictive practices. The social model would draw focus to the social causes of ‘challenging behaviour’ and the social points for intervention. For example, unmet need, legitimate expressions of resistance and protest, inadequate supports, ill-equipped support people, and cultural issues that exclude and devalue people with disabilities. The social model does not ignore a person's impairment. Communication barriers due to impairment and the behavioural responses to pain and trauma, for example, are also relevant. But when we use a social approach we can understand these issues in terms of what can be done to meet the person’s needs. The focus lands on what changes could be made to the person’s supports and environment in order to support their communication needs or pain management needs etc rather than on how the person can be fixed or controlled to stop the ‘challenging behaviour’, as might be the approach using the medical model of disability.

 

The absence of the social model means that individualistic models (such as the medical model) will be used to interpret the Framework by default as these are the dominant models. People with disabilities have long identified that sole use of individualistic models for understanding disability and disability related issues is very unhelpful and even harmful. The Framework needed to guide the disability service sector to use the social model of disability to understand restrictive practices and how to eliminate them, as it is also used in the National Disability Strategy to understand other issues facing people with disabilities.

 

 

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Why do people with disabilities need access to domestic violence law? FAQs Addressed

Everyone, including people with disabilities, has the right to be safe from violence in our own homes. The law should protect this right but many people with disabilities are excluded from domestic violence law in the ACT.

 

People with disabilities are at greater risk of violence, especially when they live in disability specific service settings. In these settings – including large institutions, smaller supported accommodation facilities (such as group houses and cluster housing), and psychiatric facilities – people with disabilities are subjected to violence by the people they live with and the people they are supported by.

 

The ACT Domestic Violence and Protection Orders Act 2008 provides victims of violence in domestic relationships a “greater level of protective response”. This Act does not recognise the relationships common among people with disabilities as “domestic”. This includes relationships in supported accommodation and other informal arrangements such as home-sharing*. People with disabilities are excluded from the “greater level of protective response” afforded to other members of the community. This must stop. Domestic violence legislation must extend protection to people with disabilities living in a range of domestic settings.

 

Advocacy for Inclusion is asked some frequent questions about the right for people with disabilities to access domestic violence legislation. Here they are along with our answers:

 

Q: If the homes where people with disabilities live don’t involve family or intimate partner relationships, why should they be considered “domestic relationships”?

 

A: People with disabilities live in these settings on a permanent basis, wherein they have domestic relations. They might live with a co-resident for a number of years, interact daily, build highly personal relationships, share living space, groceries, and jointly own furniture. These are undoubtedly domestic relationships, which can become violent. Just because these domestic relationships are ‘unconventional’ and might meet particular disability support needs this should not disqualify a person from equal protections from domestic violence. This discriminates on the basis of disability.

 

Q: Won’t people with disabilities be inappropriately criminalised, particularly when they might not understand their actions or have been placed in the home without choice?

 

A: It is often (but not always) inappropriate to criminalise a person with disability using violence in a disability specific service setting. Violence is often systemically induced by the lack of control and choice afforded to people with disabilities in these settings. The domestic violence law in NSW covers disability specific home settings and general share-house arrangements. Our colleagues in NSW tell us they rarely use the legislation to pursue criminal charges unless the victim wishes to do so. Any person experiencing domestic violence should be able to make that choice, regardless of whether they live in a disability specific arrangement or not. As in all other cases brought to court, the court is responsible for determining whether the user of violence should be held criminally responsible, and how the user of violence should be appropriately relocated and supported.

 

Q: Is this really an issue for the legal system? Shouldn’t the disability service providers deal with it?

 

A: The answer to this question is multifaceted.

 

1.    Having disability support needs and living in disability specific settings due to these support needs should never be the basis to exclude a person from accessing justice. This is discrimination.

 

2.    People with disabilities face enormous power inequalities in disability specific service settings and informal caring relationships. They rely on the support provider to access day-to-day necessities. In supported accommodation, they usually have little say over household routines, the provision of support, or who lives in their household. It is the job of the law to help balance out power inequalities when power is abused and when relationships within these settings become unsafe.

 

3.    Research shows that violence thrives in places where outsiders are kept out. For a range of reasons, many disability service providers have failed to identify and resolve issues of violence in service settings. This includes a lack of understanding and awareness and it also includes the deliberate use of violence and cover-ups. This is not for the disability sector to deal with outside of the law and without community scrutiny.

 

The purpose of legislative reform would be to ensure that people with disabilities are protected from violence at home on an equal basis to people without disabilities. The legal framework in NSW has promoted greater recognition of domestic violence in disability specific settings. This has led to better responses by service providers and by government, including the funding of appropriately targeted programs and resources. This is sorely lacking in the ACT, with many people with disabilities ineligible for appropriate services due to the definition in the legislation, such as the Domestic Violence Crisis Service.

 

People with disabilities need the general community to recognise that just because their living arrangements looks a little different to the mainstream idea of “domestic”, they too feel the full impact of domestic violence and need to be safe in their homes. The legal framework in NSW should be adopted in the ACT and other jurisdictions to afford people with disabilities the same safeguards against domestic violence as everyone else.

 

* Home-sharing includes arrangements where person with disability shares with one or more unrelated people who provide informal supports in exchange for benefits such as reduced rent.

 

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16

Extra Self-advocacy Group meetings

Advocacy for Inclusion is very excited to be adding extra Self-advocacy Group meetings to our schedule over the next few months.

 

Are you a Self-advocate and want to catch up with other Self-advocates more often? Then this is your opportunity!

 

The Group will be Co-facilitated by Self-advocates, and you can talk about the issues that interest you.

 

With support from the ACT NDIS Taskforce we will be running 2 extra Group meetings each week until the end of June 2014. The Groups are open to all of our Self-advocates and to people with disabilities who have wanted to do a Self-advocacy Course with us. All meetings will happen here in the Griffin Centre.

 

Groups will be meeting on:

- Wednesdays from 2 pm to 3.30 pm, and

- Thursdays from 1 pm to 2.30 pm.

 

If you would like more information you can contact the Training team on training@advocacyforinclusion.org or by calling the office on 6257 4005.

 

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15

NDIS trial sites - what's going on for parents with disabilities??

 

At Advocacy for Inclusion we are doing a brief analysis on how people with disabilities are accessing parenting supports in the NDIS trial sites.

 

Are parents with disabilities using the NDIS to access parenting support? If yes, how is this going? If no, why not?

 

If you have experience in the trial sites as a parent with disability, or if you work with parents with disabilities, please share your experience with us! We want to write a brief report to share publicly on this issue.

 

Contact Ellen at ellen@advocacyforinclusion.org or phone (02) 62574005

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07

Supporting parents with disabilities - Good practice VIDEO

Did you know that people with disabilities can and do parent well with the right support? This video by Healthy Start provides a fabulous overview of good practice approaches. Healthy Start is a national capacity building strategy which aims to improve health and wellbeing outcomes for children whose parents have learning difficulties.

 This is a must see for health professionals, practitioners working with families and children, and anyone working with people with disabilities:

 http://www.youtube.com/watch?v=lMyegwFEwZU&feature=youtu.be

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01

Men's Self-advocacy Course - Final Week

Sadly our Men’s course came to an end today, but we have had a great week to finish it off!

After meeting to chat with our auditors our General Manager Christina presented the men with a t-shirt in our “Ask me, I make my own decisions” design. (See picture below)

We then set off separately to our destination out at Yarralumla. Many phone calls and driving circles later we finally managed to meet up in one place for our BBQ! Little did we know that our final week was going to be a unit in problem solving and team work skills!! Luckily we passed with flying colours and enjoyed a relaxing BBQ, socialising and getting to know each other better.

Most of the men were keen to join the Self-advocacy Group to continue their development and building their social networks, and one of the men is already planning to book in for his next course.

Thanks to all the men for your enthusiastic and supportive participation in the course. Thanks also to the Canberra Men’s Centre for their support, and to all our guest speakers.

If you are interested in finding out more about our next Men’s Self-advocacy course please contact us on 6257 4005, email training@advocacyforinclusion.org or on our website http://www.advocacyforinclusion.org/index.php/training/2013-training-calendar#MeSA2

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31

Women's Self-advocacy Course - Week 3

Our topics last Thursday were Decision Making and Speaking Up for Yourself. Very timely as one of the women had an issue she needed to work through!

Decision making may seem easy but it’s important to work through the steps, especially for bigger decisions such as where to live and who with, which job to work in, where to go for holidays and so on. It’s important to look at the underlying issues that may be present and consider the possible benefits and risks for each decision and outcome.  Steps in decision making include:

1.                   What is the decision about?

2.                   What are the options?

3.                   Evaluate the possibilities

4.                   Make your decision & do it!

5.                   Monitor & Evaluate

We then worked through a Step by Step Plan that will support self-advocates to speak up. If you’d like to download this plan and give it a try you can see it as part of our free Self-advocacy Kit here: http://www.advocacyforinclusion.org/index.php/88-uncategorized/131-sa-kit-list - it is item 2.3

We are looking forward to guest speakers from SHFPACT on safe relationships, and ACT Health on women’s health in the coming weeks.

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